Why do some women get lymphedema?

Answers -Saskia Thiadens
We don't know which patients will develop lymphedema and which will not. There are patients who develop lymphedema shortly after breast cancer surgery and axillary lymph node dissection. In my opinion, the patients who develop it shortly after surgery clearly already had a compromised lymphatic system, and, as a result of the trauma to the lymph nodes and lymph vessels, they immediately experienced swelling of the limb.

There now are ways of identifying this by ways of diagnostic procedures such as the lymphingioscintography. This is a nuclear medicine procedure where we inject a dye in the subcutaneous tissue in the web of the fingers and visualize the lymphatic system and identify problems.

Marisa Weiss, M.D.
This can be a valuable technique in patients who appear to be at a significant risk for lymphedema. It is not considered a 'routine' test. In general, if you are without this unusual predisposition to develop lymphedema, the risk of lymphedema from breast cancer treatment is increased as the amount of treatment you receive is increased. That is, the more extensive the lymph node removal under the arm, the higher your risk. Radiation to the lymph node-bearing areas in the underarm also increases your risk. The use of multiple chemotherapies in high doses can also add to the risk. The onset of lymphedema right after surgery can certainly occur. It is also true that lymphedema can occur even years later. So taking care of your arms over time and staying active is important, but with a higher level of awareness of your arms and taking care of your whole body.

Answer
Two other risk factors were mentioned by Saskia earlier. One is weight gain that may put someone at greater risk for developing lymphedema, and the other is an infection post-surgery called cellulitis, or injury or trauma to the arm.

Saskia Thiadens
Anybody who has had axillary lymph node dissection is at risk for life, so follow preventive methods closely at all times. No blood pressure measurement, no injections, and no blood drawn from the affected limb—ever.

Marisa Weiss, M.D.
Your skin is one of your best friends. Your skin has a very important job to protect your arm against any type of trauma or infection. If you have dry skin or you tend to have cracked skin, or a habit of picking your skin near your fingers, you need to modify what you do. It is very important to keep your hands moist and your skin moist to minimize the amount of cracking. And if you find that your habit of picking your skin on your hands is difficult to break, I often suggest that my patients wear cotton gloves at home, which you can buy from the Vermont Country Store catalog. This can help you stop doing some of the things that might put you at a higher risk for infection.

Answer
People who have had bilateral axillary node dissection have a particular problem, because they are at risk on both sides. These people, in particular, as well as all lymphedema patients, really need to advocate for themselves whenever they're having medical procedures, and they may need to educate the medical professionals about the risk for developing lymphedema.

Marisa Weiss, M.D.
What do you suggest to women who have had lymph node dissection under both arms?

Answer
Some people recommend using the older surgical site. Some recommend using the non-dominant arm.

Marisa Weiss, M.D.
If you are right-handed, use your left side.

Saskia Thiadens
I recommend not using the affected limbs at all. You can take a blood pressure from the leg and hopefully find a vein in the ankle or foot. Another important point is that many patients today are wearing a lymphedema alert bracelet, which alerts medical professionals that there should be no blood pressure taken or needles inserted in the arm. The National Lymphedema Network (HOTLINE: 1-800-541-3259 or 510-208-3200) provides these bracelets.

Marisa Weiss, M.D.
Many women today who are receiving chemotherapy after a breast cancer diagnosis use a mediport or a portacatheter, and this allows the injection into a 'button,' which drains into a big vein closer to the neck, so there is no need for any injections in the arm or other parts of the body. For some women, this is very useful. It is usually kept in place through chemotherapy, and for some period of time after. It is generally not used permanently. That is, it is removed after it is no longer needed on a regular basis.

Answer
There are safer ways. If for some reason you can't have blood pressure taken on your leg, you can instruct the person taking blood pressure on the arm not to inflate the cuff very, very high.

Saskia Thiadens
Better avoid taking the blood pressure on the arm if you can help it. Listen to the patient's history and heart. If there's a concern, it has to be taken, but I wouldn't do it if it were not necessary.

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